Wow Has It Been A Year?

I can't believe it's been a year since I wrote a post about us on here. It's funny that this post is to share the results of Big B's latest 24 hour urine with everyone because that's what my last one was about.

The results from this time last year were actually slightly elevated which meant it was likely pheochromocytomas were forming but it wasn't something to worry about yet. I don't know why I posted that it was normal and I apologize for that.

His most recent results (which are from last week) show that he has NOT gone up at all and while everything is still slightly elevated it isn't any higher than this time last year so that is very good news! It means that we are still in watch and see mode but not having to hurry towards surgery anytime soon.

We'll continue to repeat the results every six months and keep an eye on things so we're not caught off guard like we were when I was diagnosed.

More good news is that he is still not even showing a trace of calcitonin so he is at FOUR years of being considered cured of medullary thyroid cancer and I for one couldn't be happier. I hate knowing that Big B and Sis have to deal with this at all but I'm so happy we caught it so early with them and their life will be so much better than mine. As a mom I can't ask for more than that.

Hugz and I will try to post more often.

Cancer Claims Another Wonderful Woman

Yes, I know I haven't written in many months and you have no clue how many times I have started a post only to delete it because my heart just wasn't in it. Blogging just honestly hasn't ranked very high on the priority list lately I guess and for that I apologize to those of you who read here.

Tonight though I read something that broke my heart and I knew that I couldn't just ignore it and not post.

Those of you who have followed my blog have read my posts having to do with Lisa from Clusterfook. The woman is amazing as she has been through cancer three times now. Her strength and outlook through it all taught me alot about how to handle living with cancer with grace and an immense amount of class.

Unfortunately I have just read that she is now in the final days of her battle and it breaks my heart. She was realistic from the beginning about her chances of making it through this time but I'll be honest and say I really hoped she would beat the odds and come out okay. She deserved a break this time, you know?

So my point of making my first post back blogging about Lisa is so that anyone who reads will add her and her family (she is leaving behind a husband and two young daughters) to your thoughts, prayers, loving vibes, or whatever you do as she is very deserving of them. From what I've read, she has fought as hard as she could and dealt with the pain long enough. Please hope she is finally able to be at peace as much as it breaks my heart to ask for her passing.

Lisa- I know you will never read this but thank you for sharing your life with us online and for the emails that helped me become better about living with my own cancer. Thank you for being so amazing, graceful, classy, and honest no matter what. I hope I can one day be even have the woman you are. You've set the bar very high sweetheart.

Go in peace, dear.

I have spent

the entire day feeling like such a moron for not going into the ER last night. So much could have gone wrong and I KNOW that but stupidly talked myself out of going. The only reason Vin even went to work last night was because I guess I talked him into it (I don't remember any of that though). He has informed me that from now on we do what HE decides with medical situations. I told him I agree and that is the plan from here on out. I have reached the point of being too incompetant to even handle my own care.

I told the endocrinologist about my symptoms and she said it sounds like maybe I had another TIA and a severe reaction to the antibiotic that my regular doctor put me on. She said she didn't see a reason to order a CT scan. She is stumped though as to why I'm still having mini-strokes because we thought that lymph node we removed would stop that but obviously it hasn't. So now we're back to square one with that.

Personally I don't agree as far as the reaction goes but I'm so tired of going through doctors because it feels like they either don't know or don't care. Vin isn't happy with the diagnosis either but he's at a loss as well because it's all just so overwelming with all of my health problems. I feel so bad for him because he has to take care of his 33 year old wife. So not fair.

So what happened yesterday very well could be a in part a severe reaction to the Avelox that I was taking I suppose. To be honest, I'm still really out of it and don't remember much about yesterday. Today things are still foggy, I can't concentrate, and I feel like I'm going to black out but I'm suppose to quit taking the Avelox and if symptoms continue then contact my endo again and she will decide what to do. *sigh*

I really don't know what to do at this point. I have a number of the severe reaction effects from the Avelox AND I have all the signs of a stroke as well. My top lip is also swollen and has been all day. No clue why. I don't know what to do from here. My endo didn't even really seem like she wanted to hear about it you know? Even Vin was upset about that.

I'm sorry to scare all of you and I'm sorry I can't give a straight answer to you right now. It may be a severe reaction to a med or it may have been a stroke. I don't know but unless I can convince a doctor to have a CT Scan done all I can do is sit and wait for the next one. I am really out of it and just can't think clearly. I made Vin go to bed because he needs to work tonight and needs some sleep. He doesn't need to be sitting up worrying about me.

I think I'm going to clean out some email, tell the kids what to fix for dinner, get something to drink (I'm also dehydrated the doctor said), and just lay here feeling all funky. lol. Fuck I can't focus! I hate this so damn much.

Ummmm, Anybody Know About Strokes?

It's very likely that I had a stroke earlier today and this is now scaring the hell out of me. No, I'm not overreacting either.

I was sitting downstairs with Vin talking to him when all of a sudden I felt like I was going to throw up NOW. I ran upstairs, didn't throw up, and layed down on the bed. My body started feeling really heavy, I got a sudden horrid headache, I was seeing spots before my eyes, I felt like I needed to sleep NOW because my eyes were crossing, and I kept blacking out for a few seconds at a time along with slurring my speech real badly. Seriously, I would be sitting there I guess slurring at Vin (I thought I was talking okay) and then I would just fall over suddenly coming to once I hit the bed.

Vin didn't know what to think and we honestly didn't think at the time that it was something that bad to worry about. We thought maybe I was tired or just dizzy from being hot or something. If we had a brain in our heads we would have called 911 for an ambulance.

The reason I think I had a stroke is because it seemed like a heavier version of the mini-strokes I've had for the past year or so. I still have a bad headache, my vision is blurry, I feel "fuzzy", and it's hard to grab the words I want to use when I talk. I just feel so weird.

I have an appointment in the morning with my endo and I'm going to ask her about it and see what she says. It has me scared at this point and I don't want to mess with something like this. I'd go to the hospital tonight but I don't want to waste eight hours in the ER waiting just to be told that it's probably nothing. It would be very hard on me to leave the kids home alone for that long (Vin works graves and the 17yo is old enough to babysit). *sigh*

Anyway- has anyone had a mild stroke or know someone who has? I'm just wondering what it felt like and how long the side effects lasted. Either way I'm talking to the endo tomorrow to see what she says and if this happens again I promise that I am heading to the ER.

YAY, AWESOME News!!!!

FINALLY I have some really great news to share with all of you. First I want to thank you though for always keeping the kiddos and I in your thoughts and prayers.

Today was Big B's follow-up appointment with his endocrinologist. Three months ago the results from his 24hr urine test (that measures catecholamines, metanephrines and VMA) suggested that he was developing pheochromocytomas aka the adrenal tumors that are part of MEN2a. The doctor said we would test again in three months and see how quickly things were changing.

Today we received the results of his most recent test and I am so incredibly happy to tell you that this test came back CLEAN!! As of right now he is NOT showing signs of pheos and we can breathe a sigh of relief for awhile.

Things could of course change with the next test in six months but for now we are just happy to not have to be discussing when to have surgery on him. Again, thank you for always looking out for us. I am so over the moon happy with this news and Big B can look forward to another year of beating the odds.

YAY!!!! YAY!!! YAYYYYYYYYY!!!!

Now You See It, Now You Don't

What is it about me that makes tumors or "possible" tumors in my body want to play hide ~n~ seek with imaging equipment? Yesterday I got the results of my 6 month follow-up ultrasound on the lump in my right breast and now I don't know whether to feel relieved or like it's just same shit different spot. *sigh*

The results this time are that they couldn't find the lump anymore. So either it is gone (which would be fabulous news) or just hiding and will show up again in 6 months making this start all over again. If you remember the trouble I've had off and on through the years with a "now you see it now you don't" possible tumor, then you'll know why this is so frustrating for me. For right now though I am taking it as a good sign and enjoying the news. Now I can move on to bigger things in life right?

The infection in my neck has also returned after being given the okay by the surgeon. This lady pisses me off to no end. I told her nurse that the infection is back but I refuse to see that surgeon EVER again! I told her I would rather go sit in the E.R. for eight hours and have another surgeon lance it instead. The nurse asked again if I was okay and I told her that I want released from Dr. T's care...period! Thankfully the infection is nothing like it was last month and I actually have a normal sized neck.

At this point I will be having my endocrinologist refer me to Dr. Moley in St. Louis because I don't trust anyone around here. Let him look at my scans and my neck and decide how to treat me. I'm tired of being afraid of what is going to get screwed up next by some half-assed quack. I've heard alot of good things about Dr. Moley and I think I would finally feel like I was getting the care I need.

Big B will see his endo next week and we'll get the new results from his 24hr urine test. I'd love to hope that everything will be normal but the realist in me just hopes things haven't changed at this point. I don't want him having to join me in adrenal sufficiency ever if possible.

NOW I Have Reached The Limit...

and I really just can't do this anymore.

So anyone wanna know what all the swelling in my neck from my surgery on the 15th was from?A G-DAMN ABSESS!!! That's right, the entire left side of my neck is absessed and disgusting. I thought I had just done something wrong during the playdate I had with a friend but nope, it was my neck showing how badly infected it had gotten.

Last Friday I called my surgeon and said AGAIN that it was huge and that I felt something was wrong. AGAIN she made me feel like crap and guilt tripped me into not coming in. So at 3am on Saturday morning I wake up because I feel something on my neck. Turn on the bathroom light and there is blood and pus EVERYWHERE. It seems that my neck got so swollen it popped a stitch in my incision to let out the festering shit that was inside.

Since I don't have any feeling at all in that side of my neck due to nerve damage, I didn't feel anything other than the outward appearance and hardness I could touch with my hands. I can't imagine what this would have felt like if my neck wasn't all messed up!

I squeezed a whole lot of stuff out of the wound, put some triple antibiotic on it, and went in to Urgent Care. I found out I had an absess, they cleaned it out (they could stick a swab almost three inches into my neck), packed it with gauze, covered the entire left side of my neck with padding and tape, and put me on antibiotics & steroids.

So I spent part of Big B's birthday in Urgent Care, had to go back to have it repacked on Sunday, had to go in again today for the same, have to go back again tomorrow....and who knows how long this will go on.

The best part? The fucking surgeon's office won't squeeze me in even though I told them how badly they have messed up!!! That's okay, I've documented every single part of this and I'm having someone's ass for this!!!

I just don't get why I keep getting crappy medical care. I'm really not a hard patient to deal with. I TRY to find good doctors. What am I doing so wrong here? I feel so beaten down and keep crying at the drop of the hat for the first time since all of this began with pity. The "Why Me?" crap is real heavy here right now but I think that's because the shitty care just seem to keep coming and coming and coming like I'm SUPPOSE to be broken by it. *sigh* I hate doctors! HATE THEM!!!